What to expect when your kid's expecting chemo?

Hi! Just over 20 years ago, when I was 8, I had vincristine (an analogue of vinblastine) as part of a chemotherapy protocol. Even that long ago I remember it being very easy to tolerate! We considered it the "vacation" part of the regimen. I did have some side effects but I'm not going to mention them here because it wasn't exactly the same medication/dosage and my experience will not be the same as your son's (that's true of any anecdotes about side effects, remember.) The understanding that I needed, and that I fondly remember my parents providing, was that the medicine was going to make me better and that I was still the same person. It's hard to remember as an adult, but "normal" for a kid is extremely flexible. He's 6--even without the medical stuff, his life and surroundings would be rapidly changing right now. He's gonna make friends, learn new things, and--even though I know you are scared and it seems impossible right now--have fun in chemo! Those things are going to absorb way more of his attention than the mechanics of chemo, I promise. Definitely reach out to Child Life and see how they can help you help him navigate them.

My family's experience with an adult at an infusion center was this, just in case a description of an infusion center is helpful: You walk in, there's a waiting room like a normal doctor's office. They take you into the back which is a room with comfortable recliner-ish chairs all around the outside of it. (There's medical stuff crammed in various places too.) The person getting the infusion sits in one of the chairs, and the family member/s sit next to them. The nurses hook up the infusion, and you all sit there for however long the infusion takes, which might be a couple hours or longer. Then you go home, and come back the next day (or whatever your treatment plan says). There are sometimes other little tests or blood draws or adjustments etc. In our case, you didn't see the actual doctor on most of the visits. Other patients might be there at the same time getting their infusion, so there's some chitchat among the people in the room. There might be a tv, or little amenities like coffee and magazines. Some people bring their tablets etc and watch a movie, some people bring crosswords, some nap, etc. If your treatment calls for you to be there every day for a week, or that kind of thing, you'll get to know the other people who are there at the same time and have little friendly exchanges with them. Some will look sick/weak and some will look fine. As anywhere, the nurses vary but often have a good sense of humor; you'll be seeing the same people over and over so make a point of learning their names, both to be friendly and so you can keep track of who's noticeably good or bad at certain procedures. Getting a port was good, in the case of my family member -- it saved a lot of pain and hassle from individual needle sticks and IV placements. The prospect seems maybe a bit scary and the port takes careful handling, but definitely good.

Unless he is a highly unusual 6 year old, the least you talk about it, the better. Tell him that he is having a new medicine put in on such and such day and he gets a new toy as a treat, because the medicine is kind of yucky. And then let him spend all of his time obsessing over which toy to get. Basically, distract, distract, distract! It isn't until about 8 or 9 that they can comprehend things well enough for the information that you want to share. Gloss over without lying. If you have already discussed this with him, and he is beginning to be anxious, you may want to go ahead and start him with a therapist to work through his feelings. It is a difficult thing that your family is going through and the support of an uninvolved professional who could just be there for him would benefit him. If he is a young 6, find a transfer object. One stuffed animal that is only used for the chemo. He can hold it for every treatment and every time that he gets sick from the treatment. And then, when the treatment is over, you can have some sort of ceremony where you mail the toy to another sick child because he doesn't need it anymore.

Great idea to get books. I wonder if you could go to the infusion center where your kiddo is going to get treatment and try to talk to some of the nurses there. There might be a pediatric nurse care manager or an especially socially competent infusion nurse who could have an informal conversation with you and/or your son. So if it was me, I might go to the infusion center tomorrow (without your son), tell the receptionist that your son will be starting treatment there soon, and ask something like, "I wonder if you have a nurse care manager, or an experienced nurse who would be free to talk to me for a few minutes. I know we have our formal intake coming up, but I was hoping to just get to ask a few questions before hand" This might not pan out as helpful, but you might get a really experienced charge nurse or some really thoughtful other nurse to sit down and talk to you about what's typical. If you really like this person's energy, then you could just ask, "hey, would you be willing to talk to our son too, when we come in on Thursday?" or whatever. Some of the questions you might want to ask could be: "What is hardest for kids about having a port?" "What side effects have you heard kids complain about most often with Vinblastine?" "What do kids bring with them for comfort?" "Can you tell me a success story you saw here recently?" "Our kid doesn't have cancer. We're worried that we won't fit in here. What other conditions do you treat with chemo here?"

BTW one of the places critical in providing a sense of normalcy and community when I was sick and after, for me and for my parents, was a http://www.okizu.org. I know we had campers who were in chemo for non-cancer conditions--might be worth looking into if there's one local to you.